Bill Text: HI SR32 | 2013 | Regular Session | Introduced

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Bill Title: Neurofibromatosis; Congressionally Directed Medical Research Programs

Spectrum: Partisan Bill (Democrat 5-0)

Status: (Passed) 2013-06-07 - Certified copies of resolutions sent, 06-07-13. [SR32 Detail]

Download: Hawaii-2013-SR32-Introduced.html

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THE SENATE	S.R. NO.	32
TWENTY-SEVENTH LEGISLATURE, 2013
STATE OF HAWAII

SENATE RESOLUTION

 

 

urging hawaii's congressional delegation to support continued funding for the congressionally directed medical research program for neurofibromatosis and encourage the renaming of the congressionally directed medical research programs to the daniel k. inouye congressionally directed medical research programs.

 

 

     WHEREAS, neurofibromatosis (NF) is the term for three distinct genetic disorders - NF1, NF2, and Schwannomatosis - and is the most prevalent genetic disorder, affecting more than two million people worldwide and making NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined; and

 

     WHEREAS, NF1 occurs in 1 out of 3,000 births, causes tumors that grow on nerve pathways, and may also lead to blindness, deafness, brain and spinal tumors, severe disfigurements, bone abnormalities, developmental delays, and learning disabilities; and

 

     WHEREAS, NF2 occurs in 1 out of 25,000 births, causes bilateral acoustic neuromas, brain and spinal tumors, and cataracts, and often leads to hearing loss beginning in the teens or early twenties; and

 

     WHEREAS, Schwannomatosis affects around 1 out of 40,000 individuals, has only recently been recognized, and is less understood than NF1 and NF2; and

 

     WHEREAS, NF is a life-long disorder that affects both sexes and all ethnic and racial groups equally, and its effects predominantly begin in childhood; and

 

     WHEREAS, the clinical course of NF can be quite variable and unpredictable, and there is no cure; and

 

     WHEREAS, NF research is a critical part of the military mission because it directly impacts our understanding of nerve cells, their degeneration, and nerve pain as well as the development of treatments for peripheral nerve regeneration after injury and brain trauma; and

 

     WHEREAS, under the leadership of Senator Daniel K. Inouye, the Department of Defense Congressionally Directed Medical Research Programs were established in 1992 and have administered more than $7,123,000,000 in Congressional appropriations and provided more than 11,315 awards to institutions worldwide; and

 

     WHEREAS, the Congressionally Directed Medical Research Program for Neurofibromatosis has been funded through the defense appropriations bill for fourteen years and is the largest single funding source for neurofibromatosis research; now, therefore,

 

     BE IT RESOLVED by the Senate of the Twenty-seventh Legislature of the State of Hawaii, Regular Session of 2013, that Hawaii's Congressional delegation is urged to:

 

     (1)  Support continued funding for the Congressionally Directed Medical Research Program for Neurofibromatosis; and

 

     (2)  Encourage the renaming of the Congressionally Directed Medical Research Programs to the "Daniel K. Inouye Congressionally Directed Medical Research Programs"; and

 

     BE IT FURTHER RESOLVED that certified copies of this Resolution be transmitted to the members of Hawaii's Congressional delegation and Director of the Congressionally Directed Medical Research Programs.

 

 

 

	OFFERED BY:	_____________________________

Report Title: 

Neurofibromatosis; Congressionally Directed Medical Research Programs